A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers

Michele Vitacca, Laura Comini, Marta Tentorio, Giuliano Assoni, Debora Trainini, Domenico Fiorenza, Roberta Morini, Gisella Bruletti, Simonetta Scalvini

Research output: Contribution to journalArticlepeer-review

Abstract

Patients with amyotrophic lateral sclerosis (ALS) need a care programme as the disease progresses. We used telemedicine- assisted integrated care (TAIC) in 40 patients with ALS, for a mean duration of 8.6 months (range 1-12). A nurse-tutor played the key role, supported by respiratory physicians, neurologists and psychologists. Each patient used a portable pulse oximeter during the daily telephone contacts to assess clinical/oxygen variations. Patients also completed a satisfaction questionnaire. During the study period, each patient used TAIC at least five times per month. There were 1907 scheduled telephone calls (86% of the total) and 317 unscheduled calls. Of the unscheduled calls, 84% were managed by the nurse-tutor and only 16% of them required specialist intervention. The most common item was the ALS clinical interview (58%), followed by the description of acute symptoms, cough ability and oxygenation. TAIC staff recommended 4 out of 12 emergency hospital admissions (33%) and 77% of the other hospitalizations. Patients and caregivers were extremely satisfied (79%) with the nurse assistance provided and the patients' confidence in handling their disease improved in 71% of the cases. TAIC provides a nurse-centred, home-monitoring programme that can be a useful way of following up ALS patients.

Original languageEnglish
Pages (from-to)83-88
Number of pages6
JournalJournal of Telemedicine and Telecare
Volume16
Issue number2
DOIs
Publication statusPublished - Mar 2010

ASJC Scopus subject areas

  • Health Informatics

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